First of all I feel I need to say I really don't mean to offend anyone, these are all my personal thoughts on my situation.....I'm scared man, I've had my head cut open several times. It's a total pain in the you know what, and it really really annoys me. So, that's probably why in real life (and most probably in my blog) I can be somewhat (incredibly) blunt sometimes, honesty is the best policy dudes. Sometimes I'm happy, sometimes I'm not...plod plod plod.....and there is absolutely positively nothing wrong with plodding.
I'm back tracking again, I felt the need to let you all know a couple of things. I know I may make light of the situation I am in, I perhaps dull it down an awful lot too but the fact of this story is each day I wake up with good vision in my one eye, a headache that's just a dull ache I think myself incredibly lucky. Some people don't and just can't get this. Those people are the ones who say '....but anyone can get hit by a bus tomorrow'......my response to those people.....at least it'll be a surprise. That's the key thing here. Let that be a warning to you. Never say that to me.....I know that a couple of you will absolutely say this to me in the next week. Not mentioning any names.
I'm back tracking again, I felt the need to let you all know a couple of things. I know I may make light of the situation I am in, I perhaps dull it down an awful lot too but the fact of this story is each day I wake up with good vision in my one eye, a headache that's just a dull ache I think myself incredibly lucky. Some people don't and just can't get this. Those people are the ones who say '....but anyone can get hit by a bus tomorrow'......my response to those people.....at least it'll be a surprise. That's the key thing here. Let that be a warning to you. Never say that to me.....I know that a couple of you will absolutely say this to me in the next week. Not mentioning any names.
The problem I have is that if my shunt blocks, meaning the fluid isn't draining away from my brain then you're in a coma within 24 hours (if you're lucky). Sometimes it's less, sometime's a little longer. I have to also mention here that this is my experience of Hydrocephalus. It does appear differently in other people. The symptoms of needing more surgery include a bad headache, vomiting, poor vision and confusion. So thinking about all of this, if I go to sleep with a particularly bad head there will always be that worry that in the morning I won't wake up and the next time I do wake up it'll be in hospital. It's always a worry but not something I can let myself dwell over. It's hard to understand, I get that but there aren't many things similar to this feeling.....that scary thought of more surgery is always somewhere in my head, it's there to keep me on form I think but it's also a particularly negative part of my world. Tough though, go to get on with it!
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So, moving on. We're getting to side effects (shout out to Miss Archer here, without whom I would never know if it was effects or affects)....headaches.....aaaah the world of headaches!! There's always someone with a headache isn't there?! Well I shall tell you this, you've not had a bad headache unless you've had brain surgery. This may sound harsh but honestly take some deep breaths and tell yourself, it's not brain surgery! Headaches are just part of the everyday excitement now, you get used to it. The most annoying thing about taking pain killers every day for headaches is when some other person either whinges about taking pills because 'they aren't natural' or because they've taken 4 already that week and they'll 'rattle' when they're old. Number 1, if anyone will rattle, it's most likely going to be me, I think absolutely nothing of taking 8 pain killers a day (you should all remember this kind of thing)! Number 2 if you're not willing to take pain killers then you're probably not in that much pain. Number 3, why do these people think medications were invented?? Skip off to La La Land people! There will always be someone taking far more medication than two paracetamol or your prescription drugs of choice, trust me.
Please don't take this blog post as an 'I am far more ill than you' post, although in some ways it is. I mean I know so many of you with great health. However, I am also well aware that there are far more people more ill than me, I catch up on forums and support groups once a month or so and so many people with similar problems to myself are unable to work at all. I am incredibly lucky I can push (and it is a push, if only I were rich I'd hire someone to shove me out of bed in a morning) myself to work part time. There are also hundreds and hundreds of different illnesses that leave people in so much pain each day, my dad is one of these people. I am simply giving you my impression of my illness and how I push through......here's a pic of me 'pushing through'!
So what else, I am always happy to give alternative therapies and what not a go too. I go through huge amounts of Tiger Balm. Here's a tip for you, put layers and layers on the stuff on your forehead if you've a headache, it'll burn and the burn is much easier to take than the headache. Not everyone can handle the burn, please use with caution, start with a little bit if you want to try it, then you'll get hardcore like me. It's similar thinking to a Tens machine. Diverting the pain to something else. I must say I've tried a Tens machine in the past, the only thing it did was give me a pain in the side and a bigger headache. I imagine them to be like those electric shock suits you can get, hilarious to watch but just gives you a new pain and possible whiplash off being 'shocked'!
What else, what else?? Hmm...we've been through my eye shebang. That's ok now, much better being blind in one eye apart from the bashing in to things on my left, the inability to judge steps and the sometimes soreness and weeping (as in leaking not crying). Did you know this though........you can't catch with one eye!!! FACT! Off you go, find a friend, shut one eye and get them to throw something at you. You'll most likely find yourself standing like a toddler with your arms out straight looking rather odd. Let me know how you get on.....
Sleeping, many of you will say, Nina is always asleep!! I am not though!! The difference is that I don't have a deep sleep. To get you to sleep at night, the brain releases a hormone named Melatonin. Melatonin is the opposite of Seratonin, so Seratonin is what wakes you up in the morning, makes you pull yourself together and feel alive. Melatonin is what tells you when to sleep, so this will/should be around 10/11pm in the evening! Again, just to note, I am not medically trained, I have a GCSE in Biology (thanks Mrs W) but that's as far as I got. This is my understanding from the past 16 years of hospitals, consultants, surgeons etc. Due to damage to my brain during initial surgery my brain no longer produces this. Now, whilst you can get a Melatonin pill it my opinion (again, do I need to keep saying this? It is my blog??) it just doesn't work the same, I spent years taking it and not really getting anywhere. So for many years now, I have been free from proper DEEP sleep. On the odd occasion I get one but most of the time it takes me hours to drop off.
Funny old thing the brain. I haven't told you all this either, now this is quite interesting! So, I have a very bad memory, I remember weird stuff, nothing sensible. Have to write down the sensible stuff! So anyway, on the day I was finally admitted to hospital, I'd been vomiting for months and so had eaten very little but that day I'd managed a spoonful of Coco Pops and half a Philadelphia Cheese and Pineapple sandwich. To this day I have never again eaten Coco Pops and as for Pineapples. Well me and Pineapples have big issues. Their very existence insults me! I honestly can't tell you how much they disgust me!
My memory is another difficult part of my life, it seems to work like this....I seem to remember important events in my life, I remember random things about nice things we've done or experienced, I remember my name and my friends and numbers too. What I don't remember are things I have no interest in, random hospital appointments and meetings. Obviously we could discuss the parts of the brain that relate to these areas of memory but again this isn't a medical blog and it's probably not that exciting.
Each time I have surgery, my worry is that I will come out the same. The thought of being unable to communicate or not live the life to which I am accustomed is the worst thing. After my first surgery which was very long and scary, I had to get walking as soon as possible, it's hard, for some reason you seem to not be able to get everything working together, I have some not so great memories of physiotherapists! They're all great and I am forever thankful but my goodness did I hate you all. I will never forget being marched up and down stairs in the General Hospital only days after surgery. There's also a worry that I will come out less intelligent, that's a scary thought for me. In the early days I always felt I had to test my knowledge with a crossword or something!
The moral of this story is that brain surgery gets easier but the pain never goes and in all honesty, I'm not sure I have ever said this but each time I think I do lose a part of me. It's incredibly frustrating and draining and quite often I find myself thinking 'what the hell am I doing?'. I mean that with regards to continuing with GCSE's then A-Levels and then a degree without a year out. This is probably where the mental thing comes in, I mean it's pretty mental, I would never advise it, you will hit a wall. I don't regret it though.
I eventually did have a year out after my degree and more surgery. Just the one though! I felt like if I stopped, I would stop for ever and that just wouldn't of worked for me.
I've found this film useful in recent years, it shows what's what with Hydro. It's good to share things like this, hopefully it can help raise awareness and allow everyone to have a better understanding of Hydro.
I've found this film useful in recent years, it shows what's what with Hydro. It's good to share things like this, hopefully it can help raise awareness and allow everyone to have a better understanding of Hydro.
So, off I skip......I hope you'll join me in the next post! I want to divert and share an article I'd written about Christmas Parties and then we can get back to life and it's limitations. There are absolutely limitations in my life but it's ok. I am always happy to stand up and shout about what I can't do as so many people seem to drown in this 'anything is possible' statement. I think statements like that can totally destroy you, it's the last thing I want to hear!
